Experiences, perspectives and values of Indigenous peoples regarding kidney transplantation: systematic review and thematic synthesis of qualitative studies

Kidney transplantation is considered optimal treatment for End Stage Kidney Disease (ESKD). Transplantation is associated with markedly improved clinical and patient-reported outcomes compared to dialysis, including increased life expectancy and quality of life, and decreased patient and health system costs [1‐3]. Inequitable access to kidney transplantation for Indigenous populations has been a sustained phenomenon over decades [4] and the causes of this differential access to transplantation are incompletely understood. Non-Indigenous populations have substantially lower rates of ESKD and experience greater access to the waiting list for kidney transplantation even when accounting for socioeconomic factors, geographical location and comorbidity [4, 5], suggesting that systemic barriers play a role in the inequitable rate of kidney transplants.

A number of barriers to kidney transplantation in Indigenous populations have been previously identified, including a lack of suitable donors, socio-economic factors, remoteness and low levels of health literacy [6, 7]. With particular regard to Indigenous patients with ESKD, identified barriers also include distrust of health care systems, lack of knowledge of kidney transplantation processes and discrimination [5]. Despite this previous research exploring these barriers, there have been few studies exploring whether the perspectives and cultural values of Indigenous individuals can enhance understanding of these inequities and inform transplantation care and improvement.

We followed the Enhancing Transparency in Reporting the Synthesis in Qualitative Research (ENTREQ) framework [8] (Additional file 1).

This systematic review has synthesised the experiences, perspectives and traditional values related to kidney transplantation amongst Indigenous peoples of four Western nations. Our search identified 8 studies (10 papers) involving 225 Indigenous people from Canada, United States, Australia and Aotearoa/New Zealand.

We found that participants had a strong desire for a kidney transplant and recognised the need for more readily available kidney transplants as a fundamental requirement to improve survival and quality of life as well as to sustain community strength and longevity in face of the impact of ESKD. However, Indigenous participants faced prejudice and a lack of cultural competence by health workers as well as wider barriers to transplantation in systems that did not support effective and culturally appropriate delivery of information and care. In particular, participants felt that clinicians often did not understand or acknowledge their cultural beliefs. Traditional values and beliefs influenced views and concerns regarding transplantation and, while many acknowledged these, strongly evident was the need to be pragmatic about kidney transplantation. Finally, participants reported profound difficulty asking others to donate because of the enormity of the request, future potential of obligation to the donor, and the lack of viable donors in their families. They also expressed concern about complications for recipients and the financial burden of either receiving or donating a kidney.

A previous general population systematic review and thematic synthesis exploring patients’ views of kidney transplant wait-listing included one minoritized population study but did not specify any Indigenous ones [21]. It identified a few themes similar to those in our review. In that review, participants also sought transplantation to regain normality and avoid dialysis. Subthemes of eligibility enigma, and uncertainty about what determined wait listing were also identified. Some studies included in that review found participants felt they were deprived of the opportunity to be listed and suspected inequities existed. However, these were predominantly perceived as due to age and co-morbidity [22, 23] with only the one minoritized study of African American people seeing this as resulting fromrace [24]. A further systematic review synthesised perspectives regarding live kidney transplantation [25] from more diverse populations. Although studies were described according to country, not ethnicity, overall 41% of participants were reportedly from ethnic minorities (although there was no explicit mention of Indigenous populations). That review identified more themes similar to ours, including aversion to dialysis; seeking better graft survival; concerns regarding donor health, donor regret and donor financial and other inconvenience; insufficient information delivery, particularly for ethnically and linguistically diverse and minoritized patients; and the need for resources to be more culturally sensitive. Many of the themes in these two reviews that were similar to our own appear to have been derived from studies involving minoritized populations.

Smedley et al. [26] theorise that ethnic health disparities arise from a complex combination of health professional, health system and population factors. We found our inductively derived themes fitted well into this framework. The poor delivery of key information reported by participants and the feeling that Indigenous cultural beliefs and values were not understood or respected both point to a lack of cultural competence by health professionalss. But this is also indicative of wider institutional racism within health systems. Institutional policies, processes and practice typically service the majority dominant culture and, as described here, efforts are not specifically geared to ensure Indigenous populations were informed or able to navigate the transplant process adequately.

The unfavourable social determinants of health experienced by most in Indigenous communities are also significant. This prohibits both donors and recipients progressing easily towards transplantation, an issue that has been identified in many countries [6, 27‐29]. Those from more socioeconomically disadvantaged groups are less likely to receive a living donor kidney transplantation, a disparity not observed in cadaveric donation [27]. Similarly, racial disparities in access to live donation have also been found to be strongly influenced by financial barriers [29]. Many countries have acknowledged the financial burden for donors and instituted donor reimbursement payments for loss of income, although this may not fully address the issue for those in more deprived groups. In a recent study from America, the authors performed a cost-benefit analysis of government compensation of kidney donors. They included the savings to society of kidney recipients not requiring dialysis and also estimated the monetary value of the longer and healthier lives of kidney recipients and found the benefits to exceed the costs by a factor of three [30].

Previous studies have found that targeted programs that acknowledge traditional values, include families, are supportive of well-informed health decision-making processes, and promote access to live kidney donation [31, 32] will facilitate increased kidney transplantation. Our review suggests that active incorporation of traditional values and beliefs into a proactive pro-donation agenda will help to build more Indigenous patient-centred and culturally appropriate programs. Traditional beliefs are not static; culture is dynamic and changes over time [33] and this is reflected in the pragmatic responses reported by some participants, but not necessarily the views of clinicians treating them [34]. Future programs need to promote working together with elders and other knowledge holders to develop responses to the challenges and needs around transplants that both honour tradition and allow flexibility.

Indigenous participants both desired a kidney transplant for themselves and recognised a pressing need for more readily available kidney transplants for others in their communities with ESKD. The prejudice and a lack of cultural competence in the workforce worked against such outcomes, as did the institutional barriers to transplantation in systems that did not support effective and culturally appropriate delivery of information and care. Traditional cultural values may impinge upon decisions regarding kidney transplantation, but participants were well able to reconcile traditional belief with their pragmatic need, hence adopting an openness towards and indeed a strong desire for transplantation. Transplant programs need to identify and incorporate these traditional values in order to promote transplantation and address inequitable transplantation rates. Programs also need to explore ways to overcome barriers, such as the financial burden for both donors and recipients, and ensure that clinicians are culturally safe in their care delivery.